Cause Exploration: Support for Mental Health Carers
Tldr- I’m looking into Support for mental health carers as a potential cause area for a while, would love inputs about ITN and generally about the subject**
Summary of key points:
Mental health as an important cause area- Mental illness seems to cause a high amount of worldwide unhappiness and seems neglected.
Carers as a potential solution- Most of the people suffering from mental health issues or illness are surrounded by family and friends, who can potentially have a high impact on the decrease or increase of their mental state. Also, there is a stigma considering mental health- leading to cases being underreported and individuals that are unwilling to seek treatment. The carers could be the first and only to discover the issues before it is too late, and the price of giving them the tools to support could be cheap and efficient.
Carers as a potential cause area- Although the suffering of carers is (probably) not nearly as severe as the people suffering from mental health issues or illnesses, the scale of the people it affects is wider and it the neglectedness is probably higher.
Elaboration:
Mental health as an important cause area
Depression is a substantial source of suffering worldwide. It makes up 1.84% of the global burden of disease according to the IHME (Institute for Health Metrics and Evaluation). The treatment of depression is neglected relative to other health interventions in low to middle-income countries. Governments and international aid spending on mental health represent less than 1% of the total spending on health in low-income countries.
Carers as a potential solution
A carer is someone who voluntarily provides ongoing care and assistance to another person who, because of mental health issues or psychiatric disability, requires support with everyday tasks. A carer might be a person’s parent, partner, relative or friend. The supporter has an impact on the sufferer and could be the first and only to discover the problem.
There are supports, guides and programs for high income countries (the quality and amount of improved due to covid, but also the depression rates are higher), but few programs and high quality study on programs who approach improving mental health through carers in low-middle income countries.
Happier lives institute did screen programs listed on the Mental Health Innovation Network, and one of the programs is peer-based. Other interesting programs are StrongMinds Peer Facilitator Programs (which are cheaper, and the facilitators have a higher understanding of the participants) and Carers worldwide. I believe research on programs such as these could be a path to potential effective interventions.
Carers as a potential cause area
The amount of the carers is higher than people suffering from mental difficulties, and their support is more neglected. Caring for a person suffering from mental health difficulties can hurt the supporter (Secondary trauma, Copycat suicide). The direct support for the carers in addition to the secondary improvement of the people severely suffering could improve dramatically the cost-effectiveness.
Summary
I believe there is a strong case to consider furthering the study of mental health carer support, and it should be a higher priority in the effective altruism community because of the potential scale, neglectedness, and cost-effectiveness of such programs.
Thanks to @EdoArad and @GidiKadosh for helping me write this up, to @CE for inspiring me to write this a year ago, and @sella and @Dan Lahav for incentivizing me to look more deeply into this topic today
Also thank you generally to everyone promoting mental health as a cause area :)
** This might be an un-updated text because I wrote it almost one year ago, would love for it to be considered as a draft in order to improve my and our knowledge. Feel free to criticize, and add any knowledge you deem relevant
Yuval—thanks for raising this important and neglected issue.
For every one person with a serious mental illness, such as severe depression, schizophrenia, PTSD, severe autism, intellectual disability, or Alzheimers, there are often several concerned carers who suffer alongside them—often including their parents, siblings, spouses, children, and friends.
In many cases, the day-to-day suffering of carers (e.g. a middle-aged parent whose young adult child is slipping into paranoid schizophrenia) can actually be as severe, or more severe, than the suffering of the person with the mental illness. It’s utterly heartbreaking to watch, helpless, as a loved one goes psychotic, ruins their life, and threatens the lives of people around them.
Yet the carers often suffer in silence, and get very little support. Indeed, mental health care systems in many countries actually prohibit carers from having any access to important psychiatric records regarding the loved ones they’re caring for—e.g. in the US (given HIPAA regulations), parents are often not authorized to know whether their adult child is actually filling their prescriptions for anti-psychotic medications, or going to therapy—even if failing to take the medications puts the parents at immediate risk of violence.
The National Alliance for Mental Illness (NAMI) in the US runs excellent outreach and education programs for carers of people with mental disorders. I don’t know if they have good randomized controlled trial data about the long-term efficacy of their programs. But, speaking from personal experience, the NAMI programs can, at least, provide some emotional and practical support for carers.
Thank you very much :) If you have knowledge or access to influental/important articles or research on the subject matter, would love to hear about it :)
I haven’t investigated this personally, but there are likely evidence-based interventions for carers’ wellbeing. One of VIVID’s upcoming pilots is with a company that provides home care services for seniors, and their CEO is using our platform to provide carers with interventions she’s familiar with.
It might be a little bit too early since we’re still in beta stage, but if anyone wants to work on this area and scale known interventions, we’d be happy to provide free subscriptions for that.
In the 1st paragraph of the summary, the link to the Happier Lives Institute website directs to a page that cannot be found. Would you please update it? Thanks!